It's about time for an update on my third son, W, the one born with congenital nystagmus.
It's been almost a year since I wrote the last instalment. That blog entry is Number 1 in the category of most read entry ever in this blog - in the almost two years of writing it! If you want a peek at it, it will open in another window if you click
THIS .
The first time I wrote about W and his nystagmus was
HERE .
W is now 2 years and 1 month old.
In the last year my little man has been on a mission to show me that he really is a truly amazing little boy.
After the worry that he was completely blind, to the frustration over having him diagnosed, today, as I sit and type this, I marvel at how he has adapted to his special eyes, which in part is probably down to him not knowing his eyes are different.
W went through a very clingy phase which he only stopped around 3 months ago.Whenever he heard a strange voice, even a voice he had heard before but maybe not for a day or two, he would either cry, if he was in his pushchair, or he would bury his face into my chest and occasionally peek out sideways to see if the person had gone if I was 'baby wearing' him (those slings that you can wear on your body to carry a baby around in).
Slowly, and with my comforting and reassurance, he began to try to 'catch' a persons attention by looking in their general direction. As he can not maintain a fixed gaze it appears to us that he is wobbling around, but I am sure his eyes have found what he was looking for. He stopped crying too.
Now, for the last month or so, he is wanting to interact with people and will do so with a gaze or a wave.
He is exploring so much more too. A simple walk in the park is an amazing adventure for him.He reacts when the birds "tweet" and loves pointing out the trees and the flowers. We stop to get a good close up look of flowers and let him smell them too. Dogs are another fascination and he will laugh and smile when a friendly one is brought over to meet him (via me asking the owner) and he attempts to stroke them before they run off.
Within the house and other familiar surroundings he is confident and assured. He moves round with ease and only has the usual toddler bumps and knocks.
When outside and walking along a new pathway or pavement he is wary of the differing colours on the ground as he can not comprehend if the change in colour means a step up or step down. He approaches with caution and either seeks out a hand to hold or will stop and very carefully and slowly approach with a tiptoe pointing forward and trying to feel if there is a step there or if it is flat and a
continuation of the path.
His close up vision is very good I feel. He notices a tiny spot or speck and can pick it up easily. When he drops something I think he uses his ears to hear the direction it goes and then 'sweeps' the floor with his eyes trying to pick up where it is located.
As for his personality - he is a cheeky, smiley, happy, funny, lovable, squishy, cuddly, clever little boy that brings joy to your heart with every step he takes.
He offers kisses and makes the lip smacking sound we make when air kissing someone. He fetches and carries things you have asked for. He helps out with chores. He does the cutest little things that he does not realise are cute, it's just his nature.
What has become more noticeable and a little worrying is his lack of speech. His understanding is 100%. He understands hundreds of words with ease. An example would be me muttering to myself "right I need to put the washing on" and he charges off, shouting in his babble, and pushes the laundry basket to the top of the landing. I carry it down and he 'helps' by holding onto the side of it.
He then leads me to the washing machine and helps me to load the clothes. He even has to pour the fabric softener into the drawer. He knows what buttons to press to start the machine as well.
Another example of him understanding is when I need to hoover. He gets the hoover out for me and tries to set it up. He follows me with the 'swiffer' mop and wipes over the area I've just hoovered.
He can get any shoe you request and the right pair for the person that asked.
He understands it all. It's just the speech.
He can say "mama, dada and nana" and there is a creeping in of the words "out and up" for which the dogs get told a lot to do! He 'sings' in this kind of "laa laa laa eeelaaa laaa laa" manner.
He can point to most body parts on himself or another person if you say "where is nana's nose?" He can copy two animal noises now "moo" for the cow and a kind of snuffle noise for a pig.
The frustration he feels is evident though. "Urrgh urrghh" is the most common sound he makes and it is meant for anything and everything and it is up to me to guess what he wants. As he is good with taking you to something or coming to find you and pointing outside the door you follow and he will show you.
As his mum I do instinctively know what he wants most of the time as I am spending all my time with him and so can see.
As for specialist help, it has been rather sporadic.
He has a paediatrician who he sees every 6 months. I must say she is rather rubbish! She seems hung up on children and their bowel habits. On our first meeting with her she asked how many times a day he goes for a poo and I replied telling her it was more once every other day. In her report she sent me a few weeks later she was more concerned with talking about him being 'constipated' than his nystagmus and vision loss.
When we met her 6 months later she again brought it up and asked if I had solved his bowel problem. To shut her up and get her to focus on the actual reason we were there for, I lied and said he went every day.
She admitted to me that she had not had dealings with vision impaired children much - so why was she assigned to us then?!
She asked for us to have a joint meeting with a vision impairment specialist for an assessment of his total development and I agreed. I requested it be done in my home as W still had the stranger issues then. When I found out the vision specialist was also the psychologist we have seen for J, I laughed.
Unfortunately the paediatrician sent an appointment through slap bang in the middle of our holiday and I had to re-arrange. She was very snotty about it, but I asked her would she come home from a two week holiday, in the middle, for one appointment. Point proved.
Again she refused to discuss a home meeting so I did what I do best - phoned and spoke directly to the vision guy. I explained all about the issues of W and new environments and that he would not 'perform' for them if they made us meet in an office. He agreed - I am persuasive when needed!
She was a bit annoyed I had bypassed her, but if you're not going to enable a situation to be the best it can be just because you are blinkered, I will go above you.
The meeting went well at my house. The usual questions and games for W. The report came back that he was advanced quite amazingly in his physical skills, of that of a child a year older than him. His understanding was excellent. It was just his speech. It was delayed by around 6-8 months. This was 'normal' apparently. But there was nothing offered to help with this.
At the most recent paediatrician appointment I requested she refer him to SALT (Speech and language therapy) to which she agreed would be a good idea. Unfortunately, and what is a common theme for families in this country, the waiting list is long. After waiting 3 months to hear anything I have decided to refer myself privately. I have found a lady, amazingly she lives 5 minutes away although covers a huge area, who is a SALT specialist, registered and trained, and carries out one to one sessions in her home. I really hope this will be the start of helping him to talk.
For all the good of people bleating on about 'early intervention' being vital for young children, the resources are not there and neither is the finance to make that a reality for every single child needing help. Just look back at the blog post I wrote ( the 2nd one linked above) which states the referral time and waiting list length to even get an initial diagnosis.
We have met with an education specialist too who deals with vision impaired children. He told me that our local authority do no provide a school for VI children until age 11. They must attend a mainstream regular school until then. He said the school would be encouraged to help W. I am totally against this. Why should he struggle in a 'seeing' school? A VI school would have everything catered for these children, and teachers and assistants fully converse with it. I am aware that there are parents out there that refuse to send their child with a disability to a specialist school, preferring to stick to mainstream, for whatever reasoning they give.
I however have seen first hand what specialist schools can achieve and how they are 100% focused and committed to delivering top class learning and support. A mainstream school, over run with children, lacking funding, no special resources etc is not going to cope with a special child,despite them being forced to do so from the government and their policy of 'all inclusive'. The government are still doing their utmost to eradicate special needs school for all but the severely disabled, but on the other hand they are not funding enough into mainstream schools to cope with the influx. Something has got to give.
W's eyes have slowed in their pace of beats (what the specialists call it when the eyes hit one side to the other) and also have slowed down in the up/down/left/right/corner/corner. He obviously still has it to the point where people notice and comment or ask questions but it is so much more 'controlled'. It does get worse and more rapid when he is tired or upset.
He is also developing something called a 'null point' - this is when the person can find a 'still' point with their eyes if they look and move their head to a certain position. I remember reading about this when he was a baby and how some null points are quite awkward and socially embarrassing as the person has to tilt their head to a major degree. W however has one appearing and all he does is tip his head ever so slightly backwards (like a waft of bad eggs has gone under his nose) and his eyes look down and they almost stop. I love moving underneath his face to see this happen as he is beginning to understand his eyes can focus better this way.
The question I get asked most about him, when I explain to people the name and nature of his condition, is "is it curable?". Their faces fall when I say no and I get "poor lad", "oh such a shame" etc but I am fairly upbeat about it and try to make them see the positives - he was born with it, therefore he knows no different and has not lost something. His brain has adapted to his eyes and their visual input.
Another positive is that I believe he can now see further than ever before.
Around 6 months ago I felt he had improved from 1 metre vision to 1 and a half metres. But lately I notice he can recognise more and more from further away, and not by guess work, sounds or the dark shadowy shape. I am putting his vision at around 2 and a half metres now, possibly even up to 4 metres on some occasions.
This is marvellous to see and proves the point that children's eyes do not stop growing until around the age of 5-6 years old.
As he is given so much visual stimuli we are encouraging his eyes every day to try that bit more. I know he has to work with what he was given and he is doing just that. There is no cure and no magical remedy that will stop the wobble, but letting him lead a 'normal' life is paramount to his development.
His other senses are fabulous too. He can sniff out chocolate a mile away. He has wonderful taste buds and is the most adventurous in his eating habits of all 3 of my boys. Chilli, garlic, onions, peppers etc are favoured by him as a flavour enhancer to potato, chicken, pasta dishes.
His hearing is pin dropping perfect. You can not open anything within a 20 mile radius of him without hearing his little feet thudding towards you from wherever he was, yelling "nurrrgh nurrrrgh" with his arms outstretched wanting to have whatever it is you are opening.
He adores his big brothers. O more than J though, which is understandable as J does not socially interact with W in the same was as O does.
O, like a lot of older siblings, finds it annoying sometimes that W follows him everywhere, wants to join in with what he is doing, and tries to 'help' him with a toy or game.
O has begun to enjoy the fact that W copies him and so will march around the house and garden, stamping his feet, clapping his hands and shaking his head side to side as he moves, and W copies him and follows him like a mini me shadow. They play chase together. Hide and Seek ( not properly though as W just closes his eyes and thinks we can't see him!). They sit together and share their snacks. W will hand out snacks to everyone equally without quibble.
They comfort each other and O is very good at calming W down if he is upset, by giving him a kiss or a hug. At bedtime W will go up to O, who is snuggled in his bed, and give him a goodnight kiss, turn his light off and close his door - so loving.
When Googling nystagmus in general, and not just in children, I find the same pages I did when searching two years ago. A lot of it is fact based and repetitive in nature and content. There seems to be no new information or support. There is the Nystagmus Network but I find this is more for adults although there is a forum for questions.
I wonder if that is why my blog and that post in particular has had so many hits?
I will use this blog to keep you updated with W and his wobbly eyes as it's important to let those new to the world of wobbly eyes that it is not the end, it is not a disaster and it is not going to change how much you love and adore your little baby or child.
UPDATE -
I have since written a few more posts about W and his wobbly eyes. You can find them here -
Nystagmus Update - The Baby Is Now Three!
Nystagmus - Overdue Update Of My Youngest Son
